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My Life With Multiple Sclerosis
By Susan Hines-Brigger
This 37-year-old mom of four speaks honestly about what it's like to live with a chronic illness, and how important faith is to the journey.


My Journey Begins
A New Normal
Another Bump in the Road
Leaning on God
Moving Forward With Faith
How You Can Help

EVERY MORNING I wake up and go through the same routine. First, I open my eyes and make sure I can focus on something, anything. Then I sit up and see if I can feel my extremities. Feet? Check. Legs? Check. And so it goes on up my body. When I finally get out of bed, I stand still for a second and make sure I have my balance. If all of these little tests work out, it's going to be a good day.

If not, as they have some days over the past seven and a half years, I resist the urge to crawl back into bed. I get up anyway and push myself forward. Such is life with multiple sclerosis (MS).

My Journey Begins

MS first reared its ugly head shortly after I gave birth to my second child, Alex, in 2002. The right side of my face went numb and I lost hearing in my right ear. My first course of action was to go to the dentist, since the numbness felt kind of fuzzy, the way it does when you get a Novocain shot. No luck there.

I then went to an ear doctor for the loss of hearing in my right ear. All the tests came back normal. But how could that be? I still couldn't hear.

Then the ear doctor threw me for a loop by scheduling me for an MRI. I don't remember now if he mentioned MS at this point, or if I was so in shock that I completely missed it.

So off I went to begin my deep-seated hatred of MRI machines. As I lay there in the tube on the verge of a panic attack, suddenly the familiar words of the Hail Mary ran through my head. I closed my eyes and repeated them over and over during the seemingly endless scan of my brain, neck and spine. When it was over, I went on my way, assuming they would find an afflicted muscle causing the problem.

A week later came the call that turned my life upside down.


I was at work when the ear doctor called. I will never forget his words: "Your MRI is consistent with someone who has MS." I was floored. How could this be? I was only 30 years old. Thirty-year-olds don't get diseases like this. (This just goes to show you how much I didn't know about the disease at the time, because that is exactly the age at which MS often hits.)

SINCE I FOUND OUT I have MS—and even before I definitively had my diagnosis—the questions I got from most people were "What do you need?" or "What can I do?"

Well, here are some things you might want to know. They are certainly based on my own personal experience, but they might provide you with a different perspective for dealing with someone you know who has a chronic disease.

Please don't tell me it could be worse. I know it could be worse. I know my disease is not life-threatening. But it certainly has been lifealtering, and sometimes that feels just as bad.

Please don't try to compare my experience with yours, your family members' or your friends'. One of the most frustrating parts of my disease is that I don't look sick. MS affects each person differently, so each person's experience is unique. I'm not in a wheelchair. I don't walk with a cane. Therefore, people often forget that I even have MS. In fact, when most people discover I do have it, their first response is often, "But you don't look sick."

And because I don't look sick, people often respond to my symptoms in terms of their own lives. When I say I'm tired, people often immediately respond with, "I know. I'm so tired, too."

Please understand that when I say I'm tired it doesn't mean I just didn't get a good night's sleep. When I say I'm tired, I mean that, despite a full night's sleep, I wake up every morning feeling as if I've been hit by a truck.

For any woman who's ever been pregnant, I try to explain it as the absolute bone-crushing fatigue of the first trimester times 10. For those who haven't had that experience, the best explanation I've read was "The Spoon Theory" by Christine Miserandino. It was adapted to people with MS at this blog: http://sunshineandmoonlight.word

Please just listen. When it comes to my disease, there aren't a lot of clear-cut answers. So please don't try to give me any. Sometimes I just need to vent to someone.

I hung up the phone and fell apart—right there at work.

The following weeks consisted of appointments with a neurologist, another MRI, a spinal tap and a whole battery of blood tests to rule out other diseases. At the end, bruised, battered and feeling utterly defeated, I was left with one thing: a big question mark.

My MRI revealed lesions on my brain—"brain spots," as my kids like to call them. My spinal fluid did not reveal MS. My symptoms did. So I had two of the three markers for MS.

And so it went for the next few years. When people would ask me if I had MS, I would always answer, "Yes, but technically I don't meet all three characteristics for a diagnosis." I felt as if that answer left me with some wiggle room—and hope.

Every year I would go to my neurologist for a checkup and an MRI, unless I had a flare-up. Each time, my husband, Mark, and I would be faced with the question of whether or not to start the steroid shots that might prevent any further exacerbations. And each time, we decided to hold off on the shots for the time being—a calculated risk, we knew—because we weren't done having kids. I just wasn't ready to give up to this disease my dreams of a big family.

In 2005 we had our daughter, Riley. Since then I've had a few flare-ups, mostly the same symptoms as always— numbness, loss of balance, but par for this course I have been traveling.

Then last October, I woke up and performed my usual morning routine, but this time I knew something was different. My entire left leg had no feeling in it. I rationalized that I must have slept on it wrong and it fell asleep. But deep down I knew that wasn't the case.

I got up and tried to go about my daily routine. I called my primary-care physician for an appointment, remembering that the day before I had twisted in the car to help buckle Riley's car seat. That must have been what caused this, I thought.

No such luck. Within a week I was on a high dose of steroids and back in my neurologist's office. Before he left the room following my appointment, I asked him, "Do I have MS? Because I've never been sure if I do since it didn't show up in my spinal tap."

"Yes, you do," he told me. So there it was.

For the past seven years I had been in kind of a limbo with this whole MS thing. Well, now I knew, and it was kind of a relief and a heartbreaker— relief finally to be able to name what was going on, and a heartbreaker because now there was no talking my way out of it.

One of the most unsettling things about this disease is the uncertainty. No one knows how it will play out. There is not a day, an hour, a minute when I don't sit and think about it. It's the first thing I think of every morning, the last thing I think of before falling asleep and too many times to count in between. You can imagine what havoc that wreaks on your spirit and mind—especially one that already has lesions on it.

I have tried really hard to keep a positive attitude throughout this journey and realize things could be so much worse. Really, I have. But I'm finding it's a day-by-day process. One day I feel as if I can conquer the world and take on anything this disease throws at me. The next day I get mad because it's not fair, scared that I won't be able to chase my kids around, worried that I'll have to move because I live in a two-story house and totally bummed because I see the way my kids look at me now and I know they're worried.

Last year my oldest daughter, Maddie, was experiencing frequent severe headaches. I took her to the pediatrician, who ran down a list of questions for Maddie, one of which was "Are you worried about anything?" I could tell by the look on her face that she didn't want to answer for some reason, so I reassured her that it was O.K. She looked straight at me and said, "My mom, because she has MS."

It broke my heart.

On days like that, the only thing that gets me through is faith. It's had to. I don't know what tomorrow holds. Neither do my doctors. Researchers are still hunting down that elusive cure.

So that leaves me with faith: faith that there is a reason I am on this journey, and faith that I will be given the strength and surrounded with the right people to help me through.

I've read my share of articles—including in this magazine—where people have spoken of the blessings their MS has brought to them. I'm not there. In fact, if I were to chart how I've dealt with my disease following Elisabeth Kübler-Ross's grief process, I suspect I haven't made it yet to acceptance.

I envy those who see their diagnosis as a blessing. I don't. I'm a mom of three—soon to be four—who gets angry when I have to tell my kids I can't play because I'm too tired, or the heat is getting to me. And as a very independent person, I hate asking for help.

But those moments when I feel my lowest are always when I am reminded—in some way—of Christ's presence. Sometimes it's a kind word from a friend, an unexpected visit or just a momentary sense of calm. Faith is my security blanket. It gives me something to hold on to when I'm angry, frustrated and sad. My faith tells me, "Don't give up. Hang in there. There is hope."

Following my last flare-up, Mark and I spent a lot of time talking and praying about where to go next. At the time we were planning to try to have our fourth child. Should we go ahead, or consider our family complete and start the steroid shots? It was a decision I had wrestled with on and off. But I felt as if something was still missing in our family.

We finally decided to go ahead with our family plans. The moment I found out I was pregnant, I suddenly knew we had made the right decision. I experienced a peace I hadn't known in years. Our fourth child is due in August.

That's not to say I'm not very aware of the fact that there is a higher chance of a relapse after I have the baby. But as with this entire journey, we'll cross that bridge when we come to it.

All I know for sure is that tomorrow morning I will wake up and go through the same routine I have for the past seven and a half years. The rest I'll have to leave up to faith.

For more information about multiple sclerosis, visit the National Multiple Sclerosis Society at or the Multiple Sclerosis Society of America at


Susan Hines-Brigger is the assistant managing editor of this magazine.

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